Thursday, September 8, 2016

Hello - It's Betty. Scott was going to post, but it is hard for him now. He is mostly sleeping about 20 hours a day. Still eating but less and less every day. Very thin. On oxygen and taking the morphine and lorazapam more frequently. He wants so badly to move on to be with GOD and be at peace and asks that if you do pray to make that your prayer.

Here is a great pic of Scott with his girls at Erica and Trent's wedding 7/24/2016.



Wednesday, August 10, 2016

08/10/16  Still here but ready to go.  Still loosing weight, not feeling ill, a little bloated still.  I do feel like someone turned up gravity on me.  Hard to get up from a laying position, hard to stand long enough to shave and brush my teeth.  Very emotional, didn't expect that.  Had a Very Special Day yesterday.   Pastor Andy came over with communion.  Betty,Erica, Rachel, Mike, Trent, Pastor, and I all had communion together.  What a Blessing!  Betty has been my Rock.  We all have certainly grown closer as a family, maybe this was God's plan?
God Bless,
Scott

Tuesday, July 26, 2016

Big change came my way last Wed. when I became short of breath and slept 15 hrs.  By Friday I was only able to take care of the signing the new will and trust for my children.  Betty took me to see an old classmate who is now a Lawyer, Jim Oneal. Truly a nice man, kept things simple, got things done quickly, just outstanding.  Signed up for Hospice that afternoon, and by Saturday I had oxygen delivered and was needed.  Spiked fevers up to 105. slept 16 hrs, was able to walk my Daughter Erica down the isle for her wedding.  The Lord let me get all the important things done so now Betty and I can just enjoy these last days, weeks?  This will be my last post from me, Betty will post when and further changes occur.  God Bless all still dealing with this and my prayers are now for a immune therapy to get rid of AML so people can be cured and not have the terrible damage done by chemo and graft vs host.
Dorian, Thank You again and GOD Bless You
Scott

Monday, July 4, 2016

Still feeling ok, getting a lot done.  I can feel the mass getting bigger, I have a little less energy, but still not ready to activate hospice.  I can't believe I'm typing that.  Oh well, the Lord is blessing me with a super summer weather wise.  It's also a blessing to kinda live normally again.  I don't care if I get too much sun, I have a beer if I feel like it.  I'm done trying things that may help, just relaxing and enjoying time with Betty, my children and granddaughter, and my siblings.  Oh, and no doctor visits :)))
God Bless,
Scott 

Tuesday, June 21, 2016

Pet Scan results showed two masses in my abdomen, biopsy showed them to be Myeloid Sarcoma which occurs in less than 1% of the population.  Go figure, just my luck.  It is usually a precursor to the return of my Leukemia (AML).  It is treated the same as if I relapsed with AML, very aggressive Chemo.  Even with treatment the prognosis is poor, not to mention I don't think my body could handle more chemo and leave me in any condition anyone would want to live in.
     So based on all this Betty and I decided that I will get palliative care and let it be in the Lord's hands.  I'm just so tired with all the issues that have come up since the original treatment not to mention the emotional turmoil Betty and I have been through.  I just can't see dragging anything out just to go through this again later.  My prayer is that they develop the T-cell immune therapy that they are testing and then people in the future won't have to be nearly killed to get rid of this or any other cancer.  We are all set with future care as the doctor sent a referral through for hospice care.  I don't need it yet, but it's one less thing to have to think about if it's in place ready to go.  I want to pass at home if possible.
     This has it's plus side, I am able to clean up my messy workshop so Betty doesn't have to deal with it:)  Money at this point means nothing to me.  I got to check on my financials set in place for Betty and the kids.  Oh, and I get to go to Heaven and be pain free emotionally and body wise, and, I will have so many questions answered.  (I have a lot of them)  I also confirmed with Betty that at this point I can do no wrong:))  Last of all I had a Guinness last night.

God Bless,
Scott

This is my Granddaughter Makenna cuddling with me on Father's Day.  She hugged me and told me she was going to make me better.  I just melted, so sweet!

Monday, June 13, 2016

I have cancer again!  I had a CT scan done a couple of weeks ago to follow up on an ultrasound that showed some possible issues.  The CT showed a mass in my lower right quadrant.  The decision was made to follow up with a CT guided biopsy.  I just got the results and they are pretty sure it's Myeloid Sarcoma.  There is also the possibility that it is the return of the AML.  The next step is to do a PET scan to see where it has spread and how active it is.  Then I will get my options.  I really can't see going through any more chemo, my body is destroyed already.  Also they found nodules on both lungs, so I get the feeling this would just draw out the suffering for me and my family.  Besides, staying here with one health problem after another, or, Heaven with no suffering, only peace.  It's not really that hard of choice .  I will post more when I get more information.
God Bless,
Scott

Monday, May 2, 2016

It's my 4th birthday today :)  Four years ago I got my stem cells and a new immune system from Dorian.  Once again, THANK YOU DORIAN!
 Last time I posted I was feeling pretty good and my Ferritin was down between 500 and 600.  Some time since Dec. my ferritin decided to go up around 1000.  I know it can change when the body is under stress.  We had stopped chelation.  In January I had an upper endoscopy to tie off any varacies in my esophagus from pressure in my damaged liver.  There were none that needed banding, good news.  I saw Dr. Galvin, my transplant MD in February and was feeling so good I asked if he thought it would be ok to get a minimal part time job.  He said yes but not to take on too much too fast.  One week later I started having gut issues, bloating, pain, diarrhea. 
This got worse and in april I asked Dr. Galvin if this could be graft vs host.  He prescribed a med that works in the digestive tract, I guess it was a steroid of sorts.  Two weeks later, my weight is down to #140, very concerning.  I recontacted him and stopped the new med.  He scheduled an upper and lower scope to see if the problem could be identified.  The found nothing more that one polp, which they could not remove because, once again, my platelets took a dive and were at 40,000  Dr. Stein, the doctor that did the scope, said his guess is it is related to my liver issues.
So I made an appointment to see my local liver MD.  He ran more blood tests and my Ferritin is still around 1000.  The question now is to start chelation again or not?  He also ordered a test of my poo to see if I am absorbing fats or just passing them through and I will be getting an ultra sound of my liver and spleen tomorrow.  My gut issues seemed to have resolved somewhat, just can't get off this roller coaster.